Lemon or Lyme? Part 2

Lemon or Lime for part two . Hello , Shira , Jen hi , Hi . And Linnea , the co-host , is back as well . We have so much great stuff to talk about , so I'm just going to dive right in Now . Recently , you launched Lemon or Lime , which I love the name , and when people get to see the video version of this , they get to see your backdrop , which is amazing .

I love it . It's so cute , it's so cute , thank you , Can you tell us what inspired you to start this vlog and what has the response been like since launching in January ?

And what I kept finding over and over again was that people were really curious and they had a lot of questions and generally everyone was pretty interested in the topic . So when I would be talking to a nurse or I'd be talking to one of my parents' friends or something , whenever the conversation ended I always felt like there was more .

I wish that I had more time to tell them everything that I thought they should know . And I kept thinking if only I had like a website or something that I could say here if you want to learn more , go to my website .

So Lemon or Lime started as a website and I was working on it for two years and then finally , a friend of mine was like what are you doing with a website ? Just put yourself up on YouTube and you're done . And I was like , yeah , that would be easier . So that's how Lemon or Lime ended up a YouTube thing . I'm just launching the Instagram account .

Now there's been a lot of that and I'm really glad because this isn't just for people with tick-borne illnesses , this is for everyone . I've had a couple people say to me you know , I would love to share your video , but I don't know anyone with Lyme disease .

I always say it's better to learn some of these things before you get sick and to prevent getting sick , because understanding about ticks , understanding their habits , where you can find them , those sorts of things that will keep you and your family safe from getting one of these awful diseases . So this , the channel and everything is really for everyone .

So that's something we all need to be educated on .

we are hunters , we are in the forest , there are ticks . We are doing checks all the time because it doesn't matter Wherever they can breed , they will breed , and Arizona included . People don't realize that .

What are your goals for lemon or lime and how do you hope it will impact the chronic illness community ?

You know , if I imagine how I was when I was first researching all of this stuff , if you Google what is Lyme disease or what is Babesia or what is Ehrlichiosis , you're going to get millions and millions of answers and it's going to be difficult to weed out what is accurate and what is not .

And there's a lot of information that's out there that even from agencies like the CDC and the NIH that are outdated . You know CDC is still saying that a tick needs to be attached 36 to 48 hours for you to get sick and that's not true . That's not true at all . It can be a couple hours . Something like Powassan virus can be transmitted in 15 minutes .

So the fact that the CDC says , oh , it has to be attached for 36 to 48 hours , that's not true . It really the clock starts ticking once the tick attaches and the tick can attach pretty quickly if it wants . Let's say you are hiking or something .

A lot of times they say stay in the middle of the trail , don't rub up against the grass and the foliage on the side , that's true . But even if you're in your backyard or your front yard gardening , they can be there too .

One of the main vectors for or , I'm sorry , hosts for Lyme disease and a lot of these other illnesses are white-footed mice , and mice tend to be around our house because they're attracted to garbage and food and things like that . Even if you're not in a wooded area and you're in a subdivision or something , there can still be ticks in your yard .

I know it's creepy , it's super creepy . Even after all this time , ticks still gross me out . They do . But we have intentionally left our backyard kind of blank . I would love a beautiful garden , but it's just . I always think about my dog off leash and running about and she may put her face in a bush trying to find a ball or something like that .

So we have left our backyard blank , just so that ticks don't have a place to hang out and wait for either me or my dog to brush by , because that's what they do . They can wait , you know , and they do this thing called questing Like .

Think of a little kid who is putting their arms up asking to be picked up like that Ticks do that on the very tip of a blade of grass , like that's all it takes wood just to de-stress . And I said to him I said you better watch it , because ticks like to hang out in wood piles , it's good shelter for them , and he kind of like , eh , whatever .

But these are things that are important to know so that you

can avoid these areas .

I think I'm going to leave it that way Because I've got enough health concerns . I think I'm going to leave it that way Because you know I've got enough health concerns . I don't need to add to the list .

And another thing that I really should mention is a lot of people have heard if you get bit by a tick you're going to get a bullseye rash . It's important for everyone to realize that only 20 to 30% of people with Lyme get one of these rashes . So that means 70 to 80% of people never got one , never get a rash .

And that's one of the reasons why it takes a while to diagnose , because if the rash doesn't show up on somebody , you're kind of guessing .

I'm like I'll try everything once .

One thing that I think everyone experiences now is less harsh winters .

Certainly , in the Midwest here , we haven't had winters kind of like the ones that we had when I was a kid Like I remember it being freezing for weeks and weeks and weeks on end , but it doesn't do that anymore , and one of the consequences of that is that when the temperature goes above freezing , ticks come out and they're active again .

So they're still around . They're still around from previous seasons .

That's not only to keep our gloves in our sleeves for warmth ,

it also protects anything from crawling , because I sat in a blind last year for my elk hunt . So I'm sitting in woods covered by wood and leaves and everything , and I'm sitting on the ground on a heated thing . It heats up when you sit on it . It's a hunting thing . It's really cool .

I really should show it for chronic illness people because it heats up as you're sitting on it . So in the forest , that's what I said . But there's still chances of tick , because there was a few days of . It was really nice , it was in the 70s , guess what . Everybody's out , everybody's riding .

Those ticks are now really , really moving and they're on the deer , they're on the elk . So we're very careful . I will tell you , none of our elk have had ticks on them when we Okay , I would recommend we're very cautious , we spray , but I don't think hunters and hikers understand the importance of how they dress when they go do that kind of stuff .

One thing that I like to use during the summer last summer I went to a couple concerts where I was going to be outside with a picnic blanket and all of the clothes that I plan on wearing in something called permethrin , so it is a tick repellent . So I treat all of the clothes socks , jeans , sweater , everything in this permethrin .

And then I get there's this . It's almost kind of like a lotion called Picardin and that's safe to put on your skin . So those are things that I use and those are specific to ticks of actual tick repellents . Yeah , absolutely , absolutely . And I also recommend you absolutely you can drench it . Yes , it is unscented and it does last for more than one wear .

So if you , if you do your hunting gear , you know , soak it in permethrin , it'll be good for you know a few uses , it'll be safe for that . Like , yeah , and like you , yeah , and like you said , long shirt , pants , closed toed shoes , tucking your sock , your pants into your socks , socks , those are all .

So the community that I found is online , because a lot of people with tick-borne diseases are homebound or bedbound , so we're really not out and about .

On top of that , the fact that there aren't really a lot of in-person support groups that are easily accessible , like something like breast cancer or Parkinson's things that you may be able to find in your community . The online community is where I have found people . The one that I frequent the most is , of all places , on Reddit .

I've kind of become a Reddit head since then and if you're not familiar with Reddit , reddit is literally anything that you can think of , whether it's you like funny cat videos or you like politics , or I love the show Friends , so I'm on a Friends subreddit .

There is a subreddit for everyone , and so I found people with Lyme disease and other tick-borne diseases and it's really nice . I think . For the most part , everyone is pretty supportive and helpful . Of course , there's going to be a bad apple here and there , like every community , every online community , but people , you know people go on there and they vent .

People say you know I don't want to be here anymore , or this is too hard , or you know I have to ingest a disgusting drink . How do you guys do it ? You know asking for advice , and so it's . It's really nice to be able to talk to other people who are going through the same thing as you .

We don't always want a place where it's only complaining Sometimes . We want a place where , yeah , we can vent about things , but we want to hear tips , tricks , support and guidance , and to me that sounds like what you're doing and that's great .

with all of this physical stuff that a lot of people don't understand , so mental health does kind of get a backseat in the conversation , but all of it is so important because all of it makes up our healing journey ?

Like you guys . That's what I'm hoping for , but right now it is a passion project and so I'm fine with that .

channel and having this you know brand or whatever , that it's going to become your identity . And she said , and I don't want this to be your whole life .

So I said to her I hear what you're saying and I understand where you're coming from , but the way that I see it is , I'm helping people , I'm being what I needed when I first got sick and there is a need for someone to be out there explaining these things and someone who's been there and is still there . But I did tell her .

I said I promise you , if it does become too much I'll let it go , but the way that it is right now , there are so many things to cover . I mean , I have endless lists of these are all the things that I want to do on Instagram and these are all the things I want to do on YouTube .

It's like I made sure the years before I actually launched that there was going to be enough for you know to talk about , because I wasn't sure Like what if I you know I've run out of things to talk about Turns out it's endless the amount of things , because there's also continuing research and things like that , so there's always news , absolutely I agree , and ,

like you said , it's ever-changing .

What does a successful day look like for you in the now ?

I haven't really found a good schedule yet where I'm able to work every single day . I actually got off of several weeks it was about a month . All of March was a flare-up , so I couldn't get anything done and a good day for me is filming or researching or writing . I've also been trying to complete .

There are these two conferences One is a Lyme and Associated Disease Summit and another one is a conference just about alpha-gal syndrome , which is a kind of a meat allergy that's emerging . That's one of the co-infections that is gaining a lot of traction lately because it's spreading , so I wanted to learn more about that .

There's always something to do , but I'm still at a place , health wise , where I'm just not able to work every day , so I just work when I can that right ?

which was I was on my feet all day as a clinical massage therapist , all day and I never thought anything of it . And it's not until you lose the ability to do something that you start to realize how much you miss it . But these diseases are serious . Tics are everywhere .

I mean , unless you're on a vacation in Antarctica , there's going to be tics near you , you know . And there's people who go overseas thinking , oh , there's no tics here , it's just in Connecticut . They're over there too . And I don't tell people this to scare them . I tell people this to inform them that all of these ticks carry different diseases .

And when you look at a tick , you can't tell what it has , and it's not until it starts feeding that it starts to inject the contents of its belly into you . So I kind of call it tick roulette , because you never know what the tick has . It's kind of a gambling situation . And another thing I mentioned earlier is a rash doesn't happen to everybody .

Not everybody gets that classic bullseye rash and a lot of people don't get a rash at all . Some people also sometimes get a rash and it looks like something else , like hives or an allergic reaction , kind of spotty .

So if you go to a doctor , they'll say , oh , that's not Lyme , because that's not an erythema migrans rash , that's not a bullseye rash , so you must have something else . What I also wish that I knew earlier was that the average doctor doesn't really know anything about tick-borne diseases .

I wish they did , and that is one thing that needs to change and I hope I can change it by bringing it to everyone's attention over and over . Yes , yes , co-infections are a big part of what makes people with tick-borne diseases or Lyme disease have persistent and chronic symptoms . It's a big part of the picture that is very misunderstood .

And co-infections are two or more pathogens in one patient . That's what a co-infection is . And so , let's say , you get Lyme disease from a tick . You also , like me maybe , started playing with feral cats just because they're cute , you know , and you don't notice any ticks .

You don't notice any fleas or lice , you know , because all of those bugs are very , very tiny . Or you pick up the cats and I literally have a picture of my 2014 infection and of course , I didn't know at the time , but I have pictures with the cats . I was visiting a barn and these two cats were following me around and I'm an animal lover .

So towards the end of my little tour of this barn , I knelt down and started petting the cats that had been following me and weaving in and out of my legs , and I picked one up . I don't know how many weeks or a few months later that I started getting symptoms , but that's all it takes and it's really crazy that you know , I got three things .

I got what's called the three Bs Borrelia burgdorferi , which is the Lyme disease , bartonella and Babesia . Babesia is considered a parasite . Some of these co-infections don't just come from ticks Ticks . Usually , the Lyme disease is pretty much always going to come from the ticks .

That we know because , apparently , ticks' bodies are better equipped just the way that they're structured . They're better equipped at transmitting Lyme disease as opposed to like a mosquito Mosquitoes , for instance , have been found to have Lyme disease in them but because of their body structure and the way that they suck blood , as opposed to ticks .

They're not transmitting the Lyme disease like the ticks do , but something like Babesia , or , yeah , babesia , for instance . This is a big co-infection and a big issue . That isn't just from ticks . People are getting Babesia from blood transfusions . They're getting Babesia from organ transplants . So it's not just ticks .

Even mother to baby congenital transmission is happening with Babesia . Now the government knows they are aware that blood is in their blood banks and some of it has Babesia , some of this blood . So imagine for a second you are sick , you are on a transplant list . You finally , finally get the call that you have an organ waiting for you .

You get the organ transplant and then you start to get sick . Imagine that . I mean how awful , is that ?

Some states are more vigilant with their testing of the blood in their bank or the organs that are , you know , waiting to be transplanted or whatever , but it's in the literature and they know that people are getting Babesia this way . Yeah , and most people are not aware of this .

are many , many different species of ticks . There's over 900 species of hard and soft ticks . They come in two categories hard and soft 900 species and there's about 100 species of ticks in the United States . So the lone star is the one that they're finding is prominently transmitting this alpha-gal syndrome , transmitting this alpha-gal syndrome .

So what happens is they develop almost like an allergy , but it doesn't behave exactly like an allergy , like if you're allergic to nuts , for instance . The reaction comes almost immediately right . That's usually what a food allergy is . Alpha-gal . On the other hand , it can take hours for the reaction to happen and people are getting anaphylaxis .

People are dying because they suddenly get this allergy and maybe they're not aware of what it is . So it's not just red meat , it's mammalian meat and also mammalian products . So collagen or gelatin think about how many medications and supplements have gelatin in the capsule . People who get alpha-gal syndrome cannot ingest those things anymore .

Some people are saying that it's curable . Some people are saying they're not sure . So I think the jury is kind of out about alpha-gal right now . Okay , and then I have a note here 70% of medications have some form of mammal ingredient in it . So if you get alpha-gal , that limits what you can take .

Now one of the things that I would love to be able to do is influence maybe med schools or nursing schools to educate their students , educate med students , educate nurses , so that

when someone comes into their office they know what to look for . If I had me and millions of other people , if we had been diagnosed early , we would have been fine . Diagnosed early , we would have been fine . Yeah , exactly .